I called you last week to vent about picking up my sons medication. You calmly talked me down from the cliff of despair. Being who you are I don’t know how you do it. Talk calmly to me when I feel like a mess of a human being. I’m not always a mess dad, but I feel like one sometimes because I’m learning to be a parent. Even though its water under the bridge I get sad sometimes because you are being more of a dad now than when I needed you the most.
I still get sad on Father’s Day when women share stories of times their fathers spent with them. Not that you didn’t spend the odd time with me. We had Taco Bell and the Monkey Forrest. We had the weird shop of your friends who sold interesting things like taro cards and a homey smell of sandalwood. There were times of listening to music which created my love for Rob Zombie and Smashing Pumpkins. The moments we had spent together were fine because it helped shape my interest. Some Fathers go fishing and camping trips but ours was outings. I think the main part of hearing stories of fathers who would do anything for their daughters is that it’s not our relationship. I don’t know if it ever will be. That’s ok though because in the last couple of years you have gained my respect.
Sometimes I struggle with your fear of my special needs child. You don’t say it out loud however some slight comments make me worried. Yes, your grandson has Autism and Juvenile Arthritis. Is it terrifying? Absolutely, I’m terrified of it too. My terrified is different because I feel like a failure when it comes to helping my child with disabilities. That’s why I try to call you because possibly, you would be able to treat me like a normal person. You see, when you’re a special needs parent your either treated like a superhero or your treated with apologies. What people forget to treat a special needs parent is with empathy and understanding that we love our kids but sometimes it’s a blurred line with doctors, medications, therapist, and school. I value you Dad, for putting words to my feelings, and I know I complain a fair bit when I get frustrated about the whole situation. Please don’t be scared of your grandson and please see the little boy that he is. He’s neurotypical and complex, but he is loving and intelligent. Creative and filled with brilliant ideas far beyond his time. You have only met him twice and you have not met your other grandson; but I think if you give them a chance to know them, you would see the parts of you in there too.
I know I was complicated much like my son, and that was terrifying for you. You were not ready for me when I was born. I get that because I had my oldest at nineteen and you were in your twenties. Here’s the thing even though I wasn’t ready I still try to be there for my kids. You did get better with my sisters and you learned to be a dad to them. I remember somebody once asked me how mad I felt that you learned to be a dad to someone else. Feeling mad is not how I would describe it. I do feel pride for you because you still grew as a person. You keep growing and I see the changes you have made in the last ten years. In ten years I have seen you as a lost person, and now I see you as a strong human being. Hearing you say that you found a new job or did something exciting makes me feel like you are finally where you need to be.
What I really want to say to you and I struggle to say it sometimes, I’m happier now knowing you than when I knew you as a kid. I’m not angry at you anymore because the dad I get now is a good dad who is trying. Giving a second chance wasn’t easy to do but I’m happy I didn’t walk away from you and we still found a way to communicate. Please don’t give up on me because I don’t want to give up on you.
My husband recently said that hes been trying to romance me and i’m not reciprocating it. Its a fair statement on his part but I wish he would understand why I’m not in the mood. It’s not his fault but at the same time I wish he would see I’m at my least sexy I’ve ever been.
This conversation of being romantic threw me mentally. I used to be a sex craved monster. I loved it every single inch of my body and my thrilling adventures exploring. The appeal the cat and mouse chase all of it I thrived in being sexy. Then came along mother hood. I love being a mom, however I’m not thriving in wanting any human contact at the end of the night. I replaced my need to have nightly booty calls with just needing space and my cats. Mother hood has fried my brains and made any touch of the skin after nine pm feel like needles.
I used to go five rounds a night followed with a morning of breakfast in my underwear. Now my morning consist of me wearing day old sweat pants or black leggings and a bra of five years ago. I used to stand at my counter pre kid era and eat with grace by plating my new recipe, until recent my plating consist of whatever quick breakfast my kids like. Some days I don’t get to eat until supper time. My conversations with my husband before kids had substance. we could hold a conversation and it meant something to me and to him. We had time for sexy conversations not conversations about if today will be the day our three year old will poop on the potty. I feel like our conversations are either about work or about kids. The sexy substance of wooing my partner have been far and few between. Even our text messages are consisting of doctors appointments for our child with disabilities or mile stones for our toddler. Most of them are now are we going to the in laws for dinner. Then during the day; now that i’m back to being a stay at home mom I am having kid conversations all day. I’m talked about at nine in the evening because I have talked about trucks and Pokemon.
I’m mentally and physically exhausted from being a stay at home mom. If i’m not being a referee of two boys, i’m negotiating the use of a toilet. I’m not sexy when I have peanut butter hand prints crawling up my pants. My sexy is depleted in this gross mom bun on top of my head with my hours old coffee mug firmly gripped in my hand. My thoughts to my husband are that I’m not sexy because I just clogged the toilet twice and changed kitty litter while singing the potty song. Everything is mess or tears or just chaotic energy. Then by supper is the witching hour our kids go insane. Bonkers completely bat shit crazy. If I’m lucky and your home on time I might get fifteen minutes to breath before we do supper and bedtime. I’m not mentally all there for my partner during this time. I feel like I tap out and just want some space.
It’s not his fault and I know it’s my fault to not put the time into romance. It’s hard to be that sexy woman I once was. He once was my soul and my time. Then we had two boys who have needs beyond the bed sheets of privacy. My dignity went out the door the minute I pushed out those sweet little boys. I cant look downstairs and the parts of me that used to have the most fun. Looking at my body I want to cry, I don’t understand how my husband can find it sexy. It’s wrinkly in the tummy from our last, my boobs sag, and I don’t look like the woman he once caressed for hours on end. As many times as I try to feel like a goddess I feel depleted. I don’t know who I am right now and I cant out think how any one would want me.
It’s not easy being a mom and a partner. I’m battling with more than my husband knows. In my mind I’m not attractive. I feel gross and mentally I feel loopy. I’m not me, the me that is attractive is someone who likes themselves enough to give a piece of it out. I want to give the time to my partner because he deserves it. The human contact we all need. He deserves to be shown how much I love and appreciate him. I wish I could get out of this mom funk and out of my own brain to give him what he wants. It could be so easy yet it seems so far out of reach. Right now I’m at the least sexy I’ve ever been.
Today was nerve-racking as we had to make a call to my sons rheumatologist. A few days ago my son was awoken at night because he was really sick. Juvenile arthritis reared its ugly head back into our lives, it never really leaves but it likes chaos at my sons expense. I hate arthritis because no child or person deserves such an ugly disease.
I have talked about arthritis in previous blog post but I can never truly get the words out on how much I hate watching this disease hurt my nine-year-old child in vicious ways. When I envision arthritis in my head it would only be described as a glob of goo with malicious smiles smearing across its face. Everything about this disease is horrifying because as a parent, the feeling of not being able to ease their pain is heartbreaking. Telling your child they cannot do certain things because this disease takes away from it is gut wrenching. Watching your child not being able to walk for more than ten minutes, or watching them be unable to do things regular children can do is indescribable.
With each appointment, each version of medication not working, each symptom that can change any day is unfair to the child that lives with it. I’m angry with this disease so angry that sometimes it breaks me as a parent to my brave warrior. The pain is one thing but holding your child because he is depressed because he feels his body failed him make you as a parent feel like your failing. I’m a mother who has an amazing son and I feel like I cannot protect him from the bad in the world because it is his body attacking him. The immune system which is normally marvellous in the jobs it performs failed at the task of being my sons defender. I’m angry; I created this failing body. I grew this body for nine months and the first day I held him I promised to keep him safe. Failing in that promise is beyond my control, but his body and immune system is failing non the less.
Being scared of what’s next is part of the deal when you have a sick kid. Before every appointment even though not religious: I pray for good news. Especially during this difficult time of being in a pandemic. I remember the first time we got our diagnosis I promised my son I would be there for every appointment, so he won’t be scared. Praying and setting mental pleas to the universe it went unheard. I cannot be there for my sons injections. His stepdad will have to take him and I will keep pleading with the universe for him to safe. This disease is scary for everyone, yet somehow my superhero of a son finds a way to stay beautiful.
Three nights ago I was holding him while he threw up and had a bad case of diarrhea. Last week he was in so much pain from walking half a block to the mail box. He said to me last night I hate my body mom it’s not nice to me. Followed with why does my body hate me because I want to love it but it’s hard. I wish there was a magic wand I could wave to take it all away from him. Instead, I will hold him longer and try to be there because he needs me to be strong for him.
I will say one thing that I admire out of this whole nasty disease is the children who live with it are so brave and fearless. They are true superheros in the face of adversity. My son and other children living with this disease are stronger than words can describe. I admire his courage and faith that he will kick this diseases butt one day at a time. Even though this disease is taking the piss out of our lives right now I know in my heart my son is the strongest little man and I can wish to be half as brave as he is.
What is parenting a sick child? I can say for sure it’s not something I would wish on my worst enemy. My eldest child has two illnesses; one is autism, the other Juvenile Arthritis. I am a selfish parent because sometimes being the parent of a sick kid is exhausting. With each diagnosis and doctors appointments with never good news, sometimes I imagine running away and finally breaking down. People don’t talk about what it’s like to be a parent of a sick kid because the feeling attached to it is judged heavily.
I’m the mom who breaks down in my car before work after appointments. I head in with a smile and try to make others day manageable. Convincing me to get out of the car and put on the brave face is ridiculous. No one on the outside is allowed to see the drowning sorrows of motherhood. I don’t want anyone to know that I feel guilt because my child is sick. It was my genetics that gave him the issues that he has. I’m selfish because I want to hate every strand of my genetic code. Placing blame on something feels good to do. I hate that this happened to my child. It curls my stomach every time a new diagnosis or treatment needs to happen. I’m selfish because I just want him to live a normal life.
Recently strangers have judged me for my sons treatments. I have received stares from people unknown, parents like myself silently shaming what they do not understand. It’s sickening to have society post awareness yet remain ignorant as to why certain treatments are necessary for my child quality of life. I want to yell at the judgmental ass holes; I want them to feel the pain and hurt I feel, I want them to understand that I am a parent barely holding my head above water, and they are the people dunking it under. It’s not their fault this happened. A part of me wants to shake them, the other part of me just wants to them see my child and not his disabilities. In the grocery store as the person states my child is too old to sit in the cart, I imagine her legs being so sore she can’t walk. What would life be like for her then? I know it sounds sick to say out loud. The feelings are there and denying they exist causes feelings of rage and loneliness.
Loneliness, fear, and feeling of rage are taboo subjects among parents of sick kids. I hate being called brave because it’s my duty to make sure my child will live a good life. I signed up for it since the day he was born. Don’t place me on a pedestal because I don’t deserve it. I cringe hard when people say thoughts and prayers or I’m so sorry. Don’t be sorry for me, don’t be sorry for my child. I wish people would ask for more information and actually support research. Another thing stop giving information read off Google and think that it’s helping. Half the articles produced lack scientific research and data to make sense of the illness my child has. I loathe people who think that one persons illness is the same as Dick, Jane, and Sally. No illness can be the same its near impossible. I wish people would understand how frustrating the misinformation is. After being overloaded from appointments to have someone tell you that doctors knowledge is wrong is overwhelming. It adds to the guilt and shame parents of sick kids feel.
Despite crying in my car, laughing nervously in appointments, screaming at total strangers this is parenting with sick kids. When the parent states they need a break from this it means that they feel overwhelmed and scared. It doesn’t mean they want to up and abandon their sick child. The parent of a sick child would do anything to not have their child anymore. Expecting parents of sick children to not break down is unreasonable. On the outside everything seems fine because that’s the way we cope with the pain of our children. Having to hide these thoughts and feelings are detrimental to the mental health of the caregiver. Society holds high judgments as to what parents of sick children should be like. Walking in the shoes of the high and mighty is damn near impossible to not create the persona of someone falsely holding it together. Its being pushed off a cliff into oblivion, no life ring in sight. It’s not as simple as cry it out and get back on the horse so to speak.
Everything in that parents and children life changes from the first diagnosis. Home, work, school and mental self-worth all change. Sometimes the struggle of a parent is to manage the illness but manage normalcy without missing a heartbeat. The caregiver of a sick child often loses their identities as they try to navigate the waters of illness. Looking from the outside within my heart is with the other parents or caregivers who feel alone or at the moment sitting in a quiet place crying. It’s not your fault and your not alone in feeling grief and anger. The world just misunderstands selfish feelings but people trying to hold it together one diagnosis at a time they are not selfish just lost.